I've been sick since 2001 when I failed to recover from what appeared to be an acute viral infection. It has left me mostly housebound, often bedbound. In effect, I've had the flu without the fever for over a decade: the aches and pains, the dazed sick feeling, the low grade headache, the severe fatigue. It cost me my career as a law professor; it cost me the ability to be active in the lives of my children and grandchildren.
Although some of my symptoms fall outside the CDC's case definition for Chronic Fatigue Syndrome, I've been given the diagnosis of CFS because it comes closest to describing what I experience.
Two infectious disease doctors who've treated me believe I have a subset of CFS called "Chronic Immune System Activation," which means that my immune system didn't return to normal after fighting off the initial virus. This keeps my body in a perpetual state of what's called "the sickness response," which refers to the aches and pains and fatigue that normally accompany an acute illness. People assume that these symptoms are caused by the infecting organism, but they are actually side effects of the immune system's battle against the organism. For most people, the "sickness response" is a good sign because it means that the immune system is working hard to fight an infection. For me, it means that my immune system is chronically active, "fighting" what may well be a phantom virus. As one doctor put it, "Your immune system is stuck in the 'on' position."
A third infectious disease doctor thinks I suffer from yet another subset of CFS in which there's a re-activation of one or more childhood herpes viruses (which remain latent in the body in adulthood). He bases this theory on an analysis of my blood work, although anti-virals have not helped me.
Despite these working theories of why I feel as if I have the flu 24/7, as of this writing, there's no proven cause and no cure for CFS. This is not surprising, given that so little money is allocated for research into this debilitating illness. Why? One reason is the absurd name. As others have pointed out, calling it, "Chronic Fatigue Syndrome," is like calling Emphysema, "Chronic Cough Syndrome," or Alzheimer's, "Chronic Forgetfulness Syndrome."
On October 15, 2009, Dr. Nancy Klimas of University of Miami's Miller School of Medicine spoke about the lack of research money to The New York Times:
My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V.
When doctors ask what's wrong with me, I can give one of two answers, neither of which is satisfactory in the context of obtaining quality health care for myself and others with CFS. That leaves me in a no-win position in the doctor's office.
Option #1: If I say, "I have Chronic Fatigue Syndrome," I'm likely to be discredited as a witness to my own condition. I've had doctors tell me there's no such thing as Chronic Fatigue Syndrome. One doctor said: "Just drink some coffee."
Option #2: If I say, "I contracted a serious viral infection and never recovered," it goes down better, but by saying this, I'm undermining the effort to bring legitimacy to the illness. Legitimacy means research money. By avoiding the phrase, Chronic Fatigue Syndrome, I'm also undervaluing the lifelong work of many doctors, including Nancy Klimas, Dr. Anthony Komaroff of Harvard Medical School, Dr. Charles Lapp of the Hunter-Hopkins Center, and Dr. José Montoya of Stanford University School of Medicine, all of whom have dedicated their careers to CFS research and patient care.
Recently, I had an appointment with a doctor regarding something unrelated to my illness. The New Patient Form asked, "Are you in good health?" I checked "no." Next question: "If you checked ‘no,' please explain." I've lost count of the number of times I've faced "please explain" on a medical form and had to choose between the two unsatisfactory options I outlined above. I needed the best care I could get from this doctor so, playing it safe, I reluctantly took option #2 and wrote, "Contracted a serious viral infection in 2001 and never recovered."
On the back side of the form was a list of symptoms with instructions to put a check in the box next to any that applied. Looking down the list, I reached: "Fatigue." What's a person with CFS supposed to do with that choice? Almost everyone I know says they're tired. But the fatigue of Chronic Fatigue Syndrome is different. CFS advocates often describe it as bone-crushing fatigue. I call it bone-crushing and sickly fatigue—that flu without the fever. Laura Hillenbrand, bestselling author of Seabiscuit and Unbroken, and a CFS sufferer herself, put it this way: "This illness is to fatigue what a nuclear bomb is to a match. It's an absurd mischaracterization."
Given no alternative but "Fatigue," I checked the box and moved on.
In the exam room, the doctor looked at my form and asked: "What's this viral infection you never recovered from?" Without using the phrase Chronic Fatigue Syndrome, I succinctly explained the different theories regarding the cause of my continued illness. He listened and then said: "What's the diagnosis?" I was cornered. "Chronic Fatigue Syndrome," I said. I watched him disengage from me. He swiveled on his stool, put his note pad down, turned back to me as if we'd just met and said: "What have you come to see me about today?"
On March 3, 2011, Dr. Montoya said in a talk at Stanford University that it was his dream that the medical community would someday produce a formal apology to patients for not believing them all these years when they said they were facing a real illness.
Millions of us share your dream, Dr. Montoya.
See these follow-up posts:
© 2011 Toni Bernhard
Thank you for reading my work. I'm the author of three books.
How to Live Well with Chronic Pain and Illness: A Mindful Guide (Fall 2015)
Visit www.tonibernhard.com for more information.